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AB 571

Relating to: a statewide Parkinson’s disease registry. (FE)

2025-2026 Regular Session Introduced by Deb Andraca and 20 co-sponsors

A statewide Parkinson’s disease registry will collect and publicly report incidence, prevalence, treatments, outcomes, and demographics to support surveillance and research.

Failed to pass pursuant to Senate Joint Resolution 1
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Bill Summary · AB 571

Summary — AB 571: Statewide Parkinson’s Disease Registry

Status: Introduced Feb 12, 2025. (Coauthor: Rep. McCarville)
Scope: Establishes and funds a statewide Parkinson’s disease registry administered by the University of Wisconsin–Madison (UW) Department of Population Health Sciences.

Purpose / Intent

To create a centralized, secure registry that tracks incidence, prevalence, treatment, outcomes, and related data for Parkinson’s disease and related parkinsonisms across the state to support surveillance, public health planning, and research.

Key provisions

  • Agency and duty
    • Directs the UW–Madison Department of Population Health Sciences (or successor) to establish and maintain the Parkinson’s disease registry.
    • Requires the department to create a public website with annual reports on incidence and prevalence.
  • Definitions
    • “Parkinsonism” is defined to include conditions with Parkinson-like movement abnormalities (e.g., multiple system atrophy, dementia with Lewy bodies, corticobasal degeneration, progressive supranuclear palsy).
  • Data collection and reporting
    • Health care providers (physicians, PAs, nurse practitioners) and health care facilities that diagnose or treat Parkinson’s disease / parkinsonisms must report specified information to the registry.
    • If a patient declines participation, providers must still report the incident (i.e., that the diagnosis occurred) but not additional patient-level data.
    • Reporting may be satisfied by including the information in the patient’s electronic medical record (EMR) if the EMR vendor relays the data to UW per required format.
    • The bill requires the department to prescribe reporting formats and to publish a list of required data elements (incident, ICD-based triggering diagnostic conditions, diagnosis, treatment, outcomes, survival, demographics, etc.).
  • Data sharing and confidentiality
    • UW may enter agreements to receive and share registry data with other states’ registries, federal agencies, local health officers, or authorized researchers.
    • Prior to disclosing confidential data for research, UW must obtain: a stated purpose, written confidentiality agreement, and (for researchers) IRB approval, a research protocol, and documentation demonstrating adequate data protections.
  • Timeline
    • The department must establish the registry and website by the 19th month after the statute’s effective date (i.e., roughly 1 year, 7 months after enactment).

Who is affected

  • UW–Madison Department of Population Health Sciences (primary operating entity).
  • Health care providers and health care facilities (reporting responsibilities).
  • EMR vendors and data reporting entities (technical/operational role in relaying data).
  • Researchers, state/federal public health agencies, and local health officers (potential data recipients).
  • Patients with Parkinson’s disease or parkinsonisms (data included; opt-out option limits certain data elements).

Fiscal and operational impact

  • Estimated ongoing costs exceed $3 million annually. Fiscal estimates project:
    • Year 1: ~$3.2 million
    • Year 2: ~$3.7 million
    • Year 3: ~$4.15 million
    • Staffing: ~10.5 FTE (roles include physician lead, epidemiology and informatics leads, project manager, outreach specialists, data engineers, data scientist, DevOps, cybersecurity, web designer, online content editor).
  • Costs cover personnel, technology (data lake, cloud infrastructure), cybersecurity, outreach, and website/reporting functions.
  • Reporting imposes administrative and technical obligations on providers, facilities, and EMR vendors (implementation costs not fully quantified).

Expected benefits and considerations

  • Benefits: improved epidemiologic surveillance, standardized data for research and policy, public reporting on disease burden and trends, potential to inform care and resource allocation.
  • Considerations: ongoing state/university funding needs, provider and vendor compliance burden, and safeguarding patient privacy while enabling research access.

Compiled from official sources — confirm details with the bill’s official record.

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